"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!

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Saturday, December 15, 2012

Day 41 Fish Oil Study

Selah was started on the new meds today. She hasn't had any reaction to it and it usually takes about 3 days before it begins to affect a child. We are hopeful that it will help her.

I had alot of errands to do and laundry so Jon stayed with her today. She only got 30 minutes of PT this morning. He took her outside and she seemed happy. It was a beautiful warm day in Florida. She is not having as many secretions which would make us think the antibiotics are working.

Today was 4 months since the accident....I was just so sad. I had gone to the mall to get my hair cut and to buy Jon a shirt for church but I didn't belong there. Everyone was so happy but my heart is so sad. I just feel like we had it all and lost so much 4 months ago. Those 3 months we had at home with the girls were the most absolute happiest days of my life. I was content with my life, I had my boys and now these wonderful little girls. I enjoyed every moment of those months. Several times I can remember telling Jon that I had never been happier in my life.... right now that happiness feels far away.

Grief has come in waves over these past 4 months, intermingled with hope. It is a hard place to be at. Tonight my heart is heavy, I'm worried and I certainly am not in the "holiday" mood. Having other children, makes me have to push through the feelings but it is hard.

I don't usually ask for prayer but I'm feeling very overwhelmed. Physically I've had some weird aches/pains and my neck is so tight I can't move it but in one direction by the end of the day. I realize our bodies are affected by stress. Throughout today, I've had to remind myself "do not fear", some days are harder than others and this is definitely one of those days. I also find that when I'm not with Selah I worry more about the future. When I'm not with her it is easier to think about the problems and challenges ahead. When I am with her, it's just Selah and the challenges don't seem as bad.

Watching the news is beyond heartbreaking.... life is so precious, our kids are so very precious, we don't know what lies ahead....love your family....

11 comments:

How you have kept going these past 4 months shows you are a woman of Great faith. The feelings you have are normal and I doubt any one could get thru this alone without God. Everything is stress related and you have a right to feel stressed after all of this. I am sure a great day is coming for you and all your family. Selah has come a long way in a short time.I pray the time in this hospital will turn out good for her. The hospital in Rochester sounds fantastic. Cannot believe how much has happened since she began taking the fish oil.I pray that you all will have a Blessed Christmas, even under the circumstances you find yourself in. Soon you will be home and in your church. You will continue to be in my prayers.(don't know if this helps but I had to send a note to you since I can't give you a hug).Dottie in Texas

When my daughter was diagnosed with Cerebral Palsy I was overwhelmed with grief. I ended up in therapy to learn to cope. My therapist told me that I would grieve over and over and over again for the rest of my life, but that the cycles would grow shorter. That was nine years ago. It usually only hits me now if I'm watching her sleep, and I see what should have been. She should have been Prom Queen, Class President, everything! She's so beautiful, so lovely, her face is so perfect. I grieve for what should have been. You will grieve. You will grieve over and over and over again, but I promise you the cycles will grow shorter. There will be love, and laughter, and a new normal. This, too, shall pass...

When my daughter was diagnosed with Cerebral Palsy I was overwhelmed with grief. I ended up in therapy to learn to cope. My therapist told me that I would grieve over and over and over again for the rest of my life, but that the cycles would grow shorter. That was nine years ago. It usually only hits me now if I'm watching her sleep, and I see what should have been. She should have been Prom Queen, Class President, everything! She's so beautiful, so lovely, her face is so perfect. I grieve for what should have been. You will grieve. You will grieve over and over and over again, but I promise you the cycles will grow shorter. There will be love, and laughter, and a new normal. This, too, shall pass...

I am praying for you honey. Maybe you can try one of her "microwave pets" on your neck? I find that helps when my neck is giving me extra problems.

With regards to what has happened in CT, I find it very hard to feel in a holiday mood. I heard "Mary Did You Know" yesterday and I lost it. I've been crying for days.

It's just.....ironic. Here we are, ready to celebrate the birth of our Saviour, and yet, He feels so far away. So much sadness

I may have to come up to Jax for medical treatment in the future, if I do, and Selah is still getting treatment (which for her sake I hope so--since it will mean they are WORKING with her!!) I want to see you and give you a giant hug finally.

I wish I could give you one now. It's no wonder you feel like this, and you know you're going to "get your fight back". It's just hard to remember that when you are feeling despondent.

I'm glad that the abx are helping and that she enjoyed being outside.

Hug your kids and draw your joy from them. I can be feeling terrible and after 5 minutes with my kids (esp when they are horsing around together) I am howling with laughter.

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